Persisting Through Progression

If you live with multiple sclerosis, at some point you will encounter the fear of progression. With every exacerbation comes the concern that the disease is finally advancing. You develop a concern that whatever symptoms you are experiencing may become permanent fixtures in your life. Progression is the greatest fear when you live with MS and the most minor of symptoms can easily induce panic. It’s important to remember though, that progression is not the end of the world.

Fear of MS progression: I’ve been there

I grew up helping care for a grandfather who had MS, I saw the very worst that this disease can do. I’ve also lived with MS myself for over two decades and in that time, my disease has progressed. In my time with MS, I’ve gone from a marathon-running athlete with a successful career to being disabled and struggling to walk more than a few feet without help.

I understand not only the fear but the realities of progression. Even now, I fear the day when I might progress even more. So I get it, every little symptom can spark the fire of fear that can burn you up. Mentally, concerns over progression and your future are very tough thoughts to conquer. Simply trying to ignore them will only let them fester in the back of your mind, letting them grow, and ultimately causing you more stress. Because of that, I think it’s important to meet these concerns head-on - to deal with them.

It’s not the end

As the great Taylor Swift once said: “you need to calm down”. The thought of your disease progressing is terrifying, but it’s not the end of your world. If you already have MS, then you’ve already gotten through more than so many people out there. You’re much stronger than you realize and you will get through any progression you come across. If you wake up one day and you suddenly can’t work anymore, or walk, or talk, or do any of the things you once did, you will survive. You will persist. You will adapt and will still live your life. Will it be easy? Absolutely not. Will it turn out as you expected? Not a chance. You will, however, live and if you want that life to be worthwhile, you will need to calm down and focus on the future instead of the past. An unexpected life doesn’t have to be a terrible life.

Don’t make it worse

We know enough now to know that stress and MS don’t mix very well. If you allow yourself to get consumed by concerns for your future, you risk forcing that progression on yourself. While I know it’s easier said than done, it’s crucial to not let your progression concerns consume you. Find a distraction, talk to your therapist, and know that you are doing everything you can to mitigate progression (like taking a disease-modifying therapy, the newer medications really are fantastic). Above all, remember that no matter what happens to you, you will survive. Most people that read my writing know that I’m not one for forced positivity and rah-rah statements. My comforts lie in reality and the reality is, you can adapt to any situation you come across.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

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